My Son With Tourette's Gave Me Advice Every Parent Needs to Hear
He was 11 and finally sitting in the front seat with me. It had been just the two of us for 10 out of those 11 years. I married my husband Scott the year prior, my son Andrew moved schools, and we lived in a new home — left our cozy/humble 800-square foot apartment on Watch Street. It faded away in the rearview mirror as we began our new family.
At this time, the tics were pretty bad, understandably so. He had been diagnosed with Tourette syndrome at the age of 7, but big changes and anxiety always exacerbated his tics. He also suffered from pretty intense ADHD at that time, and we were in a trial-and-error status trying to figure out how medicine could help Andrew without too many side effects (and without significantly worsening his tics).
We were on our way to football practice; that pungent smell of football pads loomed in the car air. I rolled down the window a bit, felt the warm breeze and glanced over at Andrew looking out the passenger side window. The energetic boy, typically regaling me with goofy trivia or funny excerpts from his day, was quiet and pensive.
The jerky head shakes were what prompted his coaches to finally come to me inquiring if he was all right. But that day in the car, it was the loud sniffing (quickly sniffing in and out) and the throat-clearing that piqued me. Knowing very well that handing him a Kleenex wasn’t going to help, I grabbed a Kleenex in a huff and said, “Here. Try blowing your nose. Are you OK?”
I knew he was OK. My own sadness and frustration came out sometimes and not always in a healthy/loving way…unfortunately. Directed at him. As if he could help it.
And that’s when he said it… It was a pivotal moment in my life as a mother. No — a pivotal moment in my life.
He turned his head from the window and looked right at me. He spoke clearly and slowly:
“Mom, this is your issue now. Not mine. I’m OK with it. I’m OK.”
Sometimes I worry about writing of Andrew’s Tourette’s for fear I’m somehow exploiting my child’s challenges in life. But no. He knows. He knows how important growth in awareness needs to happen; he knows other moms might benefit from understanding they’re not alone.
This is part of my life and story.
Scheduling and leaving work for doctor’s appointments, three different pediatric neurologists, up late doing research on possible long-term effects from certain medicines, calling insurance companies because they cancelled the only med that seemed to be working properly and how was I going to afford $150 for 10 pills as a single mom making entry-level salary?, meetings with teachers to help them understand he’s not trying to be disruptive… please don’t isolate him.
And then there’s the guilt. The guilt of caring too much — watching how others at church may notice and stare, watching Coach put his hands on Andrew’s shoulders, “you OK, buddy?”, watching from the car as he walks off tic-ing away. Do other people fall in love with his tics the way I do?
“Here, Andrew, try this! This might work!” And when it didn’t, did he feel badly about himself?
So here’s the thing. The thing we have to ask ourselves as parents. Are we projecting our own frustration and anger onto our children, in the name of love and protection, without even realizing we’re doing it? If so, yes, it can be harmful, but no… we don’t have to feel guilty. It’s normal. We are not alone.
But we must let go. The more of a nonissue it is to you, the more of a nonissue it may be to him/her. And I know that ain’t easy, Momma. Dad, I know it’s ultimately because you love him/her. But let’s face it… the less issues we have to deal with in this crazy world, the better we will be.
Not all moms have the luxury of their child kindly stating, “Mom, stop. You might not be OK, but I am.” Not all parents have a child who can clearly articulate such insights. That’s why it’s important to not feel guilty and to share your feelings with loving/supportive people. And this goes for any weakness, illness or shortcoming we have as parents.
Whether it be your own anxiety/depression, over-caring and/or overbearing about your child’s weight, just being impatient or unkind to your family because life is hard and you know they’ll love you regardless. Maybe you’re a little too involved in the athletic performance of your child. Acknowledge your behavior and seek support.
When it becomes more important to you, than it is for them… that’s the red flag.
Many times kids will let us know. “Chill out, Mom! Let me have fun. I’m enjoying this, I’m learning, I love my team…but you are the one making me not want to do it.”
However, many times they won’t say a word at all, but their behavior yells “back off.” Then it becomes our responsibility to transcend our own body and be a witness to our own selves and our own behavior.
When you can tell your behavior is irritating your child to the point of them withdrawing, avoiding, etc., a few questions come to mind:
Why am I behaving this way? I obviously want what’s best for my child, but it’s clearly too much. Is it because I care about what other people think? If that answer is yes, is it because I care about how other people treat my child or is it fear of my reflection as a parent? Maybe it’s a little of both.
This isn’t to induce guilt.
If you’re exuding an attitude or behavior of which you’re not proud (even if just 5 percent of the time), you’re not alone. You don’t have to conceal the toughest of days. Parenting is the hardest job in the universe, and finding that line between caring and caring too much (or maybe even for the wrong reasons) is not only natural but how we learn as parents. Isolating those feelings from your support system (or even from your own acknowledgement…aka denial) does no one any good. There is no such thing as the perfect parent.
Of course when Andrew taught me that day “Mom, this is your issue now…”, I immediately went to “What is wrong with me? I must be the worst mom!” But in our hearts, we know better. And so do they. Trust that.
It wouldn’t be the last time I became overwhelmed and upset with his tics and projected frustration toward him. But those next times I quickly saw my behavior and was able to switch gears. I could see that he really was OK. I was able to see in this moment, my behavior was based on how I was feeling as a mom: bummed that he wasn’t “growing out of it” like I thought he might. They (the more severe tics) had been waning, almost not noticeable for months, and there they were back with a vengeance. That anger and frustration and sadness that he would have to continue to explain to others in his adult life about these often very-disruptive tics made my mama heart hurt.
But wait… he’s fine. He has zero issue calling out his tics and helping others understand what they mean to his surroundings. He has zero problem making friends and building relationships. As a matter of fact, his friends often find his tics endearing and recognize them as just another thing that makes Andrew special. (He’s a talented musician, creative writer and gifted actor, by the way!)
Don’t be afraid of your raw feelings and behaviors as a mom or dad. Take note of them. Reflect on them. Watch your child. Are they happy? Do they have friends? Are they able to help others understand their tics? Do they display a fervent love for sports/music/theatre/etc.? And one of the most important questions to ask yourself as a parent of a child with Tourette’s: Are they bringing up the tics to you? Or are you constantly the one bringing it up?
These are tough questions. And it hurts sometimes. But don’t feel badly! And talk to each other about it. Find support. Remember, you are not alone. If you’re having a certain feeling, someone else is likely having that very same feeling.
But when it comes time to your child… keep it about them. Kids want to please us. (I know that’s a tough one to believe at times. Ha!) But when we are always seeming bummed out or disappointed/upset about something (something that they cannot even control like a mysterious brain uniqueness!), it hurts them.
Be happy with them.
And when I say “happy with them,” I don’t mean “pleased by them.” I mean “be joyful with them.” I’m not telling you to be their pal. You are still the parent.
But spend time with them, and be joyful! That’s all they really want and need. I can promise you that.
Follow this journey on Mom in the Patch.
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